Not sure what to think...

My spouse could do things in the afternoon that he hadn't been able to do in the morning. He could not figure out how to do something on Monday but then be able to do it without assistance on Tuesday.

In his case this fluctuation was genuine. It is characteristic of Lewy Body Dementia. Many people who don't understand that thought he was faking not being able to do things sometimes. Nope.

I wonder if there is any medical reason for the fluctuations you observe in your husband? Wildly varying blood pressure? Some relationship to blood sugar levels? Amount of fluid he is retaining? (Does it get better or worse after he pees? Any difference at all?)

Just because we don't know the reason for the fluctuations doesn't mean there is no reason.

On the other hand, I don't know if I'd be above milking the situation a bit. If I were sad and scared and sick I might continue to allow people to wait on me beyond the point where it was necessary. Probably not consciously and deliberately, but self-soothing behaviors can become automatic.

Which is five paragraphs to say I don't know what you should think, either.

Can your back take all that transferring? I wonder what would happen if you told him you need a rest and he'll have to go into a transition care unit until he regains enough strength to be able to transfer himself.

My husband is bedridden and obviously cannot walk. I too wait on him hand and foot. He does have CHF, but after scores of tests from at least six neurologists, no reason for his lack of mobility has ever been found. He’s gotten quite used to ordering me around. He fights going to the doctor as well because he knows getting him out and about is darn near impossible and a huge effort for me.

If you’re asking if your hubby enjoys the maid service, I can say “probably not”. I know mine would much rather be doing for himself. Being the way he is is emasculating for my husband. There are times he lashes out. If you’re around my age (I’m 64) our menfolk were raised to be the warrior providers. To be the way they are now would have earned them the “sissy” award.

Pursue the medical angle. Do try to get him to the doctor sooner than his next appointment. Yeah, it’s a giant pain. Tell him you’re worried and want to have it checked out. It’s not easy to convince them, I know. But deep down even if they fuss at us, they know we’re doing it for their own good because we love them.

Dusti, you write novels if you want to! My husband just doesn’t want to be messed with either. He had a stroke in 2003 and a nearly fatal heart infection in 2013. Like your honey, he’s had his share of doctors too. Trouble is, he needs to be seen. Because he’s bedridden, I am checking out doctors who make house calls. I just need someone to check him out and make sure the old ticker doesn’t have any more surprises in store for us and to renew the drug store of prescriptions he’s on. Other than that, I “do for” him what I can and just leave him alone. It’s hard not to fuss and ferdiddle over him, but that’s the way he wants to roll, so I go along with it best I can.

"He would never go to a transition unit."

Never is a very long time, Dusti. Let us say you have another stroke (please don't) and you have to be in the hospital several days and then in rehab for 3 weeks. What is he going to do?

What if you say something like this, "Hun, I'm going with Ruth to her family's cabin for 10 days. We leave on the morning of the first. I thought you'd want to be able to plan ahead."

He can decide things like he's never going to a care center, even for a limited time to regain strength. He can decide not to visit doctors, or to visit them and ignore their advice. He is a competent adult. His life. His decisions.

And you are a competent adult, able and entitled to make decisions about your life. There are very few "nevers" for you, unless you put them there.

My husband had CHF and dementia. I told him, "I will never abandon you. Even if at some point you need a care center I will stick with you and be your advocate, through sickness and health, for better or for worse. And you need to do your part, too. We can get through this together." This resulted in his attending an adult day health program a couple days a week. It was his decision; he did it for me.

This is just a reminder that as you consider what to do with/for/about your sweety, you must also keep in mind your own physical and mental health needs.

Hi Jeanne and Amijoy,

Thank you for your great replies and information. Hope you don’t mind but will respond to both of you in this one post as I have a feeling my honey will be in need of my help shortly.

Jeanne- I agree. It has to be frustrating for him as he has always been strong and my rock. I know when my seizure disorder was active and I had my strokes, I felt so helpless. So even though my situation was different ( I have CHF and diabetes as well, but am not severe like my honey) I know what he is going through.

We have ruled out blood pressure (I monitor it very closely - we take it once a day and more if warranted) and know the fluid retention has some impact on it. But no, no difference at all as to how much he can and will do. He just went back to couch on his walker. When he got there he started moving the pillows the way he wanted until he saw me standing there, then he could not do it any more (he said).. so I fixed his pillow and now suddenly he can't lift his legs from the floor to the foot stool like he has a couple of times this afternoon. I realize by this time of evening he is tired. But I am hoping that when he goes to the CHF clinic that they will help get the fluid off and put him in a rehab. He is very inactive which is against dr orders.

Thanks for asking about my back. My back is in misery, but yesterday I bought a brace for it that is both for lifting and a back brace. It and my tens unit have it to a level that I can deal with. He is around 260 right now with the edema and is 5'9". I am 4'10 3/4 and weigh around 178. Now if I can just figure out what to get to pull him up with besides my forearm. He says he is not strong but my arm and shoulders are suffering. He would never go to a transition unit. I can barely get him to his doctor appointments and then I have to put my foot down and tell him either I take him or I will call an ambulance for them to transport him. It is hard getting him to the car (once we get to his cardiologists office I get help and a wheelchair for him) and the last time we went to the doctor he fell going into our garage. I had to call the fire department to come help him up (third time last week I have had to call FD). He is kind of like someone who has been in bed for 6 months and has lost all of their strength (muscle atrophy). Not giving up on him, but am just praying that they have a cancellation and get him in before July 16th. I am definitely going to read up on Lewy Body Dementia… I had never heard of it. He had strokes but before all of this he was fairly active and involved though it did leave him disabled (not paralyzed).

Ahmijoy-Thank you for your post. I wish I could get him to a neurologist. He is supposed to be under care of neurologist (due to his strokes), diabetes specialist and kidney specialist….cannot get him to go period. I understand as he has undergone so much since his first heart attacks and especially since November. As I said in my response to Jeanne, I have to put my foot down to even get him to see his cardiologist and right now he will not go to his primary care. Before November when the fluid retention, difficulty with his breathing when laying down hit he went willingly to the ER and was home two hours later feeling much better and shedding the excess fluid. This time I could not get him to go (he kept accusing me of wanting him to be in the hospital which I don't) and I believe it was sheer terror of going to the hospital that allowed him to get in this condition. I tried everything to get him to go and even putting my foot down did not work.

I am close to your age… will be 67 in September. My honey will be 66 in two months. If I can get an earlier appointment, he will go. We are not married (not even common law) so as long as he is of sound mind, I cannot force the issue. (and don’t want to unless I have to).

Strokes I can deal with as my Dad (I took care of him) and my honey had strokes. And I have done all of my own rehab on the strokes that I have had (12). But this is new territory for me.

I agree, I believe my honey knows that I want what is best for him (or hope he does).

Sorry it looks like I wrote a "book" again (smile). I just wanted to thank you both for being there and responding to me. I will definitely take everything y’all have said to “heart”. (no pun intended) Have a great night!

You as well, sweet lady. Sending hugs! And some for the dogs, too. I don’t know what I’d do without mine!

Hi Jeanne and Ahmijoy….

Ahmijoy…. thank you for your response and the hugs. (smile)

Jeanne....I have told him this, but he still refuses to do anything that will make it easier on me. He fell while trying to sit down on the walker (thank heaven he landed on the carpet so it was softer) just a little earlier today and I had to get the fire department out to get him up (this is 4th time in less than a week). The whole time after he got up from the toilet he kept telling himself he can't. And sure enough he fell. I wish he would start saying "I am going to do this" but he keeps telling himself he can't. Sometimes I think he psych's himself out. But he is putting his legs on the footstool by himself today. His confidence is totally shot and instead of trying to overcome it he seems to be in the poor, poor pitiful me frame of mind. Anyway, long story short, my back is completely out again and I am now back in my brace and back on my cane. Ouch! Threw it back out trying to help him when he was falling. He is now mad at me as I have told him I may not be able to pick up our groceries until tomorrow unless my back eases up. I may see if they can deliver them.

Thank heaven for my study. When he was acting like a horse's patoot toward me after the firemen left, I headed for my study while he was resting. He said running off again and called me a coward. Advised him when he acts like a horse's patoot and gets verbally mean, I will not stay in the same room with him as I am not going to argue with him nor put up with his verbal abuse toward me. (We have argued more since Nov than we have in 30 years). I am waiting until we find out what the Heart Failure Clinic has to say before making any decisions on my part as my back can't handle this being a permanent issue.

I had told Steve a number of years ago that if he got down to where he could not take care of himself and had to have 24 hour care he would have to go to a rehab facility as I have to work and I could not care for him 24/7. Guess he forgot that conversation. I refuse to lose my home and all of us end up on the street.

Now to see what the rest of the day brings. Thanks for the shoulder y'all. Sorry to complain and unload on y'all as you have enough going on. Scares me to death every time he falls.

Dusti, I don't think I made my advice clear. Tell him you are going for R&R and THEN GO. Don't make idle threats.

Dusti, that’s one of the scariest things about my situation too. What if something happens to me? My BP is pretty high. Bad back, bad shoulders, fibromyalgia and arthritis, etc. Who takes care of Hubby? I had a dream the other night that he actually was able to get up. They’ve never found anything wrong with him. Nothing shows up on the tests he’s had that would prevent him from walking. But if I go down, well, my daughter has 2 special needs kids and a lazy hubby. Son has a new baby and his wife doesn’t like us. They would NEVER take on hubby! He’d have to become a ward of the state. Doggie would go bye-bye. House would go bye-bye. It’s very scary!

I understand. My hubby started to get tired of the testing, poking and prodding about neurologist #5. Deep,down, I know he feels his lack of mobility is all in his head. He’s said that. Maybe he should have gone for psychiatric therapy instead.

None of us can predict the future, I guess. It’s scary but all we can do is the best we can, right? Sending hugs and more hugs.